A survivor’s story of persistence

Regular exercise has been a part of Kommah McDowell’s life for as long as she can remember. Kickboxing was her sport of choice and according to her doctors, enabled her to withstand potentially devastating treatments.

In January 2005, she found a lump about the size of a marble in her right breast. She initially thought it was a cyst that usually came and went with her menstrual cycle.

Just to make sure, she went to her primary care physician, who assured her that it was nothing serious. But McDowell had other thoughts.

Other symptoms started to appear the following month. She said that her right breast became tender and enlarged — double the size of her left breast. Although she is brown-skinned, she had definite undertones of red in her skin.

The problems didn’t stop there. Her breasts started dimpling. “I noticed it on the underside of my breast,” she said. “I had just one. When I checked the following day, I had dozens of dimples.”

What she was experiencing was peau d’orange, a condition that causes the skin of the breast to resemble the skin of an orange.

She also experienced another symptom. Her breast was warm to the touch. “It actually became pretty hot,” McDowell said. Her nipple flattened.

McDowell finally demanded a mammogram from her doctor. She said the report came back negative. Undeterred, McDowell then requested an ultrasound. It too came back. No cancer.

Making matters worse, McDowell’s primary care physician continued to assure her that she didn’t have cancer, even though McDowell said she once pulled up her blouse to show the doctor how different her breasts looked.

Fed up, McDowell, still thinking that the cyst was the cause of the problem, asked to have it removed. Three days after the procedure, doctors told her what she already sensed.

She did, in fact, have cancer.

At that point, McDowell went for a second opinion at the City of Hope Cancer Center, a National Cancer Institute-designated Comprehensive Cancer Center.

A doctor there told her what others couldn’t — she had inflammatory breast cancer (IBC), a rare and aggressive form of cancer that occurs mostly in young black women.

She was 29 years old at the time of her diagnosis, and though she had a strong sense that something was terribly wrong, she still broke down when she heard the word “cancer.”

“My eyes filled,” she said. “How could I have breast cancer at my age?”

IBC occurs in less than 5 percent of all cases of breast cancer, and because of its rarity, is often not recognized by doctors.

“If a doctor treats 100 patients a year with breast cancer, only one might be IBC,” said Dr. John K. Erban, the director of clinical programs and co-director of the Gillette Center for Breast Cancer at Massachusetts General Hospital.

IBC does not begin with a lump, so mammograms don’t readily pick it up. It does not start in the ducts or lobes, as do most other breast cancers. Rather, it begins as cancerous cells in the lymph vessels of the breast. The lymph vessels empty into the lymph nodes, which filter out bacteria and other unwanted substances.

But once a cancer has infiltrated the lymph system, it has quick and ready access to the rest of the body. That’s how cancer cells spread.

The symptoms of IBC resemble an infection, and the most noticeable are redness, swelling and tenderness of the breast. It is characterized by its rapidity, Erban said. “When it is diagnosed, it is Stage III or IV.”

And it comes with no warning.

Doctors unfamiliar with IBC initially treat for an infection, but infections, such as mastitis, in women who are not breast feeding are rare.

But, Erban cautioned, “If a doctor has prescribed antibiotics, thinking it is an infection, you should see an improvement in the symptoms within 48 to 72 hours.”

If the symptoms persist, the woman should see a doctor who specializes in breast disease.

The usual treatment for IBC is aggressive chemotherapy — usually two or more different types of drugs — followed by removal of the breast, then radiation. Another round of chemotherapy is sometimes needed, as well as hormone therapy if the cancer is estrogen-sensitive.

The survival rates have increased once chemotherapy was added before surgery. Also, some experts believe that if IBC does not recur within three to five years of treatment, it might be cured.

McDowell was fortunate. The doctors told her they were glad she was in good shape, because they were going to hit her with everything they had to fight the disease.

She went through two cycles of different types of chemotherapy. She had surgery and radiation. Fortunately, the cancer had not spread beyond her lymph nodes.

But life is not all bad for McDowell. She got married during the course of her treatment. She was a bald but happy bride.

She still exercises — walks about three miles a day — and is expecting her first baby next March.

And she started the KS Inflammatory Breast Cancer Foundation, dedicated to offering financial assistance, transportation and a support network to cancer patients.

McDowell said she started the foundation for one reason: “Just in case I didn’t make it.”

Kommah McDowell, 32, was the survivor spokesperson for the American Cancer Society’s Relay for Life held in April in Pomona, Calif. McDowell is a three-year survivor of inflammatory breast cancer.

Kommah McDowell (left), shown with her husband Charles, lost her hair while undergoing treatment for inflammatory breast cancer.